Hello all. Checking in after receiving my first Lemtrada infusion (full 5 days). I did not know what to expect. Diagnosed since 2001, relapses prior to 2014 had involved primarily numbness in extremities and minor short-lived visual disturbances. THIS relapse took my balance, several components of effective speech (articulation, word searching), swallowing difficulties, my singing voice !!!) ....I was falling into walls, door frames, in bathtub, etc.
They administered solumedrol simultaneously with the Lemtrada every day, along with Acyclovir, Benadryl, and one other I do not recall. The Acyclovir was to prevent fungal infection/complications like shingles, which I've had before. The Benadryl was pretty high dosage and made me sleepy every time they administered it- it was to prevent allergic reactions. I slept a lot. I don't remember what the other medicine was for. I think it was Ibuprofen or Tylenol.
It made for a pretty long day, checking in each morning and not really leaving until 4:30/5:00 pm most days, but I slept so much it didn't really bother me. While I was in the hospital they made me wear a fall risk bracelet and they took my vitals all the time. I didn't really encounter any adverse reactions until the third day. One of the reactions to the Lemtrada appears to have been a lower heart rate. My nurse attached electrodes to get an EKG printed out for the internal medicine doc to interpret because if it ran too low they would not proceed with the infusion. I drank coffee in the meantime and my heart rate went up to an acceptable albeit lower than normal for me heart rate.
The next day, they did another EKG for the same reason. Heart rate elevated to an acceptable level again so they proceeded with the infusion. Later that day I started feeling REALLY uneasy during the infusion. I had a sharp headache smack me right across the forehead, I could feel my heart rate speeding up, and I was having a hard time breathing. My nurse had left to get some paperwork or something and when I hit the call button no one seemed to be aware. They asked me what I needed, I told them I needed a nurse because I felt sick all of a sudden, and I think the connection between the call button and their attendant was disconnected. I was majorly concerned that I was having an allergic reaction and got out of bed, went to the doorway, and told the first person in scrubs I needed my nurse, just as I saw my nurse walking back to the room. Whew!
That episode ended with my nurse assessing my heart rate, administering some pain meds for the headache, offering to administer something to assist with the breathing (a lighter variation of steroids already given- I declined because that issue resolved itself afterwards) and monitoring my heart rate till it finally settled down a half an hour later. I was seriously concerned when it happened because it was uncomfortable, but my nurse told me I was about where they expected a reaction to occur if there was going to be one, because of the accumulation of Lemtrada in my system after four days.
The last day was pretty uneventful and shorter than the previous days out of familiarity the staff had with me by then. The most unpleasant facet of the experience was that they ran two infusion lines, one in each forearm. Ideally, one was for Lemtrada, the other for the steroids and other added medicines. On at least two days they wound up running both medicines through one IV because my veins are tiny, elusive, deeply buried, and uncooperative to get a needle in. They used their IV Team (nurses selected specifically to only perform IVs/PICC lines/Central Line IVs when they were trying to start new IVs because either I had a vein blow or the meds were infiltrating the tissue instead of going into the vein. To their credit, the team found new veins by their second try on all attempts and never had to stick me more than three times on the three instances they were called to start a new IV. Thank you, IV team. NOT my favorite thing to do.
When I left the hospital, it was with a walker. Prior to leaving the hospital, I felt my balance improving. I stored the walker in my garage on my third day home. My speech and swallowing issues cleared up. I still couldn't sing worth a darn. One week after lying around at home and sleeping I started physical and speech therapy. The physical rehab therapists were awesome and explained what exercises to do to regain function, and why they worked the way they did. The speech therapist helped me understand the various cognitive processes at work in effective speech and swallowing but so far we've mostly explored the various types of memory and how the brain retains memories because that is what I focused on with her to see if I had experienced cognitive deficits from the last eleven years. She tested me in four areas and I have one area to complete testing in, which is spatial memory/spatial relationships. I'll know more when I see her next, but I had suspected I was trying to compensate for deficits before the last two relapses but couldn't "prove" it.
I'm pretty much convinced I have some cognitive deficits with memory based on work-related challenges, and I am awaiting a finding from the Bureau of Vocational Rehabilitation to see if they will accept me for rehab services with regard to seeking employment. In addition to receiving speech therapy prescribed by my neuro, BVR had me evaluated for cognitive deficits, not just speech. I am unemployed currently because one week prior to going in for the infusion, my employer discovered I have MS and laid me two days later. One month prior to that, my employer had given me a positive performance evaluation and a significant raise.
My physical symptoms of poor balance from the relapse had not manifested themselves until I left employment there, but I HAD noticed minor speech issues when trying to talk to coworkers. My job was as a drafter, and I had issues with my employer's unlicensed, cobbled together software and inconsistent data entry programs...so I suspected my problems were possibly a result of cognitive deficits. On the other hand the timing was certainly odd. He paid me the remainder of the two weeks I hadn't worked prior to leaving, my two weeks of paid vacation, and two weeks of severance pay.
I asked him if he would have a problem if I sought unemployment, and he said he wouldn't contest it. I'm still waiting to hear from the bureau of unemployment to see if and when they will accept my application and approve me for unemployment pay. I think if I am approved, they still factor in severance pay as income before allowing a claim to be processed. I have had people tell me my termination was discrimination and in violation of the ADA. I'm not so sure of that. My state is a right-to-work state, and I had never disclosed my diagnosis nor asked for accommodation. If I had known that my drawings were unacceptable, I would have asked for accommodations. There were unused offices in the building that would have cut down on distraction from the sales floor where my desk was.
So...I am continuing to work my therapy program, hoping my balance returns to normal since previous symptoms such as numbness resolved. I hope this post gives anyone considering Lemtrada an idea of what to expect. I can't say the Lemtrada is what got me off of the walker and given my speech back... probably more a matter of the high dose steroids for five days...but I'll take it. It sure beats running into walls. I think the test of how well Lemtrada will work for me lies in the long run...hopefully no more relapses.
They administered solumedrol simultaneously with the Lemtrada every day, along with Acyclovir, Benadryl, and one other I do not recall. The Acyclovir was to prevent fungal infection/complications like shingles, which I've had before. The Benadryl was pretty high dosage and made me sleepy every time they administered it- it was to prevent allergic reactions. I slept a lot. I don't remember what the other medicine was for. I think it was Ibuprofen or Tylenol.
It made for a pretty long day, checking in each morning and not really leaving until 4:30/5:00 pm most days, but I slept so much it didn't really bother me. While I was in the hospital they made me wear a fall risk bracelet and they took my vitals all the time. I didn't really encounter any adverse reactions until the third day. One of the reactions to the Lemtrada appears to have been a lower heart rate. My nurse attached electrodes to get an EKG printed out for the internal medicine doc to interpret because if it ran too low they would not proceed with the infusion. I drank coffee in the meantime and my heart rate went up to an acceptable albeit lower than normal for me heart rate.
The next day, they did another EKG for the same reason. Heart rate elevated to an acceptable level again so they proceeded with the infusion. Later that day I started feeling REALLY uneasy during the infusion. I had a sharp headache smack me right across the forehead, I could feel my heart rate speeding up, and I was having a hard time breathing. My nurse had left to get some paperwork or something and when I hit the call button no one seemed to be aware. They asked me what I needed, I told them I needed a nurse because I felt sick all of a sudden, and I think the connection between the call button and their attendant was disconnected. I was majorly concerned that I was having an allergic reaction and got out of bed, went to the doorway, and told the first person in scrubs I needed my nurse, just as I saw my nurse walking back to the room. Whew!
That episode ended with my nurse assessing my heart rate, administering some pain meds for the headache, offering to administer something to assist with the breathing (a lighter variation of steroids already given- I declined because that issue resolved itself afterwards) and monitoring my heart rate till it finally settled down a half an hour later. I was seriously concerned when it happened because it was uncomfortable, but my nurse told me I was about where they expected a reaction to occur if there was going to be one, because of the accumulation of Lemtrada in my system after four days.
The last day was pretty uneventful and shorter than the previous days out of familiarity the staff had with me by then. The most unpleasant facet of the experience was that they ran two infusion lines, one in each forearm. Ideally, one was for Lemtrada, the other for the steroids and other added medicines. On at least two days they wound up running both medicines through one IV because my veins are tiny, elusive, deeply buried, and uncooperative to get a needle in. They used their IV Team (nurses selected specifically to only perform IVs/PICC lines/Central Line IVs when they were trying to start new IVs because either I had a vein blow or the meds were infiltrating the tissue instead of going into the vein. To their credit, the team found new veins by their second try on all attempts and never had to stick me more than three times on the three instances they were called to start a new IV. Thank you, IV team. NOT my favorite thing to do.
When I left the hospital, it was with a walker. Prior to leaving the hospital, I felt my balance improving. I stored the walker in my garage on my third day home. My speech and swallowing issues cleared up. I still couldn't sing worth a darn. One week after lying around at home and sleeping I started physical and speech therapy. The physical rehab therapists were awesome and explained what exercises to do to regain function, and why they worked the way they did. The speech therapist helped me understand the various cognitive processes at work in effective speech and swallowing but so far we've mostly explored the various types of memory and how the brain retains memories because that is what I focused on with her to see if I had experienced cognitive deficits from the last eleven years. She tested me in four areas and I have one area to complete testing in, which is spatial memory/spatial relationships. I'll know more when I see her next, but I had suspected I was trying to compensate for deficits before the last two relapses but couldn't "prove" it.
I'm pretty much convinced I have some cognitive deficits with memory based on work-related challenges, and I am awaiting a finding from the Bureau of Vocational Rehabilitation to see if they will accept me for rehab services with regard to seeking employment. In addition to receiving speech therapy prescribed by my neuro, BVR had me evaluated for cognitive deficits, not just speech. I am unemployed currently because one week prior to going in for the infusion, my employer discovered I have MS and laid me two days later. One month prior to that, my employer had given me a positive performance evaluation and a significant raise.
My physical symptoms of poor balance from the relapse had not manifested themselves until I left employment there, but I HAD noticed minor speech issues when trying to talk to coworkers. My job was as a drafter, and I had issues with my employer's unlicensed, cobbled together software and inconsistent data entry programs...so I suspected my problems were possibly a result of cognitive deficits. On the other hand the timing was certainly odd. He paid me the remainder of the two weeks I hadn't worked prior to leaving, my two weeks of paid vacation, and two weeks of severance pay.
I asked him if he would have a problem if I sought unemployment, and he said he wouldn't contest it. I'm still waiting to hear from the bureau of unemployment to see if and when they will accept my application and approve me for unemployment pay. I think if I am approved, they still factor in severance pay as income before allowing a claim to be processed. I have had people tell me my termination was discrimination and in violation of the ADA. I'm not so sure of that. My state is a right-to-work state, and I had never disclosed my diagnosis nor asked for accommodation. If I had known that my drawings were unacceptable, I would have asked for accommodations. There were unused offices in the building that would have cut down on distraction from the sales floor where my desk was.
So...I am continuing to work my therapy program, hoping my balance returns to normal since previous symptoms such as numbness resolved. I hope this post gives anyone considering Lemtrada an idea of what to expect. I can't say the Lemtrada is what got me off of the walker and given my speech back... probably more a matter of the high dose steroids for five days...but I'll take it. It sure beats running into walls. I think the test of how well Lemtrada will work for me lies in the long run...hopefully no more relapses.
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